Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study

Abstract

Objective

Previous work suggests that stigma negatively impacts quality of life in people living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). This study aimed to explore experiences of enacted stigma (experienced discrimination) and felt stigma (shame, fear of exclusion) among Dutch ALS/PMA patients and their caregivers. A secondary aim was to assess associated factors of enacted/felt stigma among patients.

Methods

A two-phase mixed-methods study was conducted, comprising cross-sectional surveys among 193 ALS/PMA patients and 87 caregivers, and semi-structured interviews with 8 ALS/PMA patients and 11 family caregivers. Descriptive and multivariable regression analyses along with qualitative content analysis were used to analyze survey and interview data.

Results

Survey findings indicate that patients and caregivers experience enacted and felt stigma. Interviews with both patients and caregivers revealed two manifestations of enacted stigma, including social exclusion (e.g. relationship distancing) and stigmatizing attitudes/behaviors displayed by others (e.g. staring), and three manifestations of felt stigma, including alienation (e.g. shame/embarrassment), perceived discrimination (e.g. feeling judged) and anticipated stigma (e.g. fear of exclusion). Patients and caregivers engaged in concealing and resisting responses to stigma. More bulbar symptoms, King’s clinical stage, younger age and living without a partner were significantly associated with enacted/felt stigma among patients.

Conclusions

Our findings reveal a range of perceptions and experiences underlying enacted/felt stigma among ALS/PMA patients and their caregivers that may serve as conversation topics in clinical practice. Future research may shed more light on the determinants as well as the consequences of stigmatizing experiences among patients and caregivers.

Keywords:

• Amyotrophic lateral sclerosis
• stigma
• quality of life
• mixed methods

Acknowledgments

We are grateful to all the patients and caregivers who participated in this study. Furthermore, we thank Conny van der Meijden, Femke van Kalken and Ruben van Eijk for their support with the recruitment, data management and data analysis, respectively.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Data availability statement

The data that support the findings of this study are available from the corresponding author, MSS, upon reasonable request.

Additional information

Funding

This work was supported by Amyotrophic Lateral Sclerosis Association.